Treatment implications of the Naviaux study (PNAS, August 2016)

[Sasha]

So, it's finally out!

http://www.pnas.org/content/early/2016/08/24/1607571113.long

It's way over my head. Are there any treatment implications? Any tests we should be getting? Are there doctors who would know what to do with the info?

P. 7:

Incremental improvements in NADPH production could theoretically be supported by interventions directed at folate, B12, glycine, and serine pools, and B6 metabolism, however the safety and efficacy of these manipulations have not yet been tested in a rigorously designed clinical trial.

Ultimately, effective treatments for CFS are likely to be achieved by careful attention to nutrition, metabolism, triggers, stressors, and physical activity as an integrated system, combined with a systems biological understanding of the triggers of the CDR and dauer entry and exit.

 

[Snow Leopard]

I don't believe that the metabolic findings observed are driven primarily by nutrient deficiencies, hence I don't really believe that supplements are the answer.

 

[Sidereal]

Pushing B vitamins has never cured anyone and never will and it makes many severe ME/CFS patients worse. Disappointed to see that sentence in the paper.

 

[voner]

I posted this on another thread, but I think it's even more relevant in this thread.

After reading the paper and the comments from Drs Davis and Naviaux, It does seem like they are saying that ME/CFS is characterized by this threat induced hypometabolic state which is stuck "on". Why it is stuck "on" is unknown, or it could be like the initial kickoff of this Hypometabolic state , have a multitude of reasons why it is stuck "on". Sorting through these reasons why would be part of the teatment process.

So part of the treatment process Would be sorting through why this hypometabolic state is stuck "on"...

 

[Cheesus]

Pushing B vitamins has never cured anyone and never will and it makes many severe ME/CFS patients worse. Disappointed to see that sentence in the paper.

If there is one thing we have exhausted, it is B-vitamins.

 

[Biarritz13]

Pushing B vitamins has never cured anyone and never will and it makes many severe ME/CFS patients worse. Disappointed to see that sentence in the paper.

But this sentence can explain why some have been better or near a remission state thanks to methylation. No?

 

[Sidereal]

But this sentence can explain why some have been better or near a remission state thanks to methylation. No?

We have an entire subforum here on Phoenix Rising with thousands of threads dedicated to self-experimentation with B vitamins. If this approach worked in a reliable fashion, we'd know about it.

 

[Biarritz13]

We have an entire subforum here on Phoenix Rising with thousands of threads dedicated to self-experimentation with B vitamins. If this approach worked in a reliable fashion, we'd know about it.

I am not saying it's the way to go for sure to find recovery but there must be a reason why methylation has worked for some (and I think for an even more ratio for whose who use the b12oil protocol) and the statement which wasn't written by a newbie.

 

[adreno]

Apparently, vitamin K is linked to sphingolipid synthesis:

In brain, vitamin K also participates in the synthesis of sphingolipids, an important class of lipids present in high concentrations in brain cell membranes. In addition to their structural role, sphingolipids are now known to partake in important cellular events such as proliferation, differentiation, senescence and cell-cell interactions. In recent years, studies have linked alterations in sphingolipid metabolism to age-related cognitive decline and neurodegenerative diseases such as Alzheimer's disease (AD).

http://www.ncbi.nlm.nih.gov/pubmed/22419547

 

[Cheesus]

Apparently, vitamin K is linked to sphingolipid synthesis:


http://www.ncbi.nlm.nih.gov/pubmed/22419547

That's interesting. There is no way to measure vitamin K in the body at the minute, however the good thing is that there is no known toxicity.

 

[Snow Leopard]

I am not saying it's the way to go for sure to find recovery but there must be a reason why methylation has worked for some (and I think for an even more ratio for whose who use the b12oil protocol) and the statement which wasn't written by a newbie.

Who here can claim remission from the "methylation protocol"? I like many others here have tried it with no real change.

 

[Skippa]

Not knowing much about it, why is the methylation protocol even A Thing then if noone benefits from it?

 

[adreno]

Not knowing much about it, why is the methylation protocol even A Thing then if noone benefits from it?

The methylation cycle is linked to the production of NADPH, which was found lacking in the study. This has been suspected for a long time. The problem with adaptive syndromes like ours seems to be that they are beyond remedy using simple nutritional approaches, because the body keeps reverting to the newfound, now preferred (mal)adaptive homeostasis.

 

[OverTheHills]

I posted this on another thread, but I think it's even more relevant in this thread.It does seem like they are saying that ME/CFS is characterized by this threat induced hypometabolic state which is stuck "on". Why it is stuck "on" is unknown, or it could be like the initial kickoff of this Hypometabolic state , have a multitude of reasons why it is stuck "on". Sorting through these reasons why would be part of the teatment process.
.

Hypometabolism stuck 'on' or 'no off switch': a fair number of us patients report here that on the very rare occasions when they get a cold they feel temporarily much better (ie a swift albeit perhaps partial remission). Does this indicate that an interruption in the 'hypometabolism on' signalling is rapidly followed by moving out of hypometabolism?

 

[ahmo]

Who here can claim remission from the "methylation protocol"? I like many others here have tried it with no real change.

Not remission. I still have significant mental and physical fatigue. But I no longer have a range of noxious symptoms, and my quality of life is incomparable to what it was before I corrected my methylation processes.

 

[Chris]

One has to remember that this study is looking only at plasma, and not trying to account for intracellular contents or activity. Having said that, it appears that DHA is high in most of us, while phospholipids, and especially sphingolipids, are low. One could go the expensive Garth Nicholson route, as has been suggested in the main thread, but one could also shift gears from fish oil to krill oil, which contains lower amounts of DHA and EPA that are apparently more bioavailable because bonded to phospholipids, which contain also some sphingolipids. I am no expert on this stuff, but it would seem an easy and inexpensive move.

 

[Gingergrrl]

I had absolutely horrible experience when I attempted the methylation supplements in 2014 (Methyl B12 and Methyl folate) but I had a positive experience with nebulized glutathione. Am not sure what that means but wanted to mention in case it is relevant.

 

[Sushi]

I had absolutely horrible experience when I attempted the methylation supplements in 2014 (Methyl B12 and Methyl folate) but I had a positive experience with nebulized glutathione.

As I remember, your doses were pretty high--higher than most of us could tolerate--I, for one, was not able to tolerate those doses. Since one of the aims of improving methylation is raising glutathione and you did well with nebulized glutathione, you might have tolerated methylation therapy at much lower doses and also been able to raise glutathione through that route.

 

[Gingergrrl]

As I remember, your doses were pretty high--higher than most of us could tolerate--I, for one, was not able to tolerate those doses. Since one of the aims of improving methylation is raising glutathione and you did well with nebulized glutathione, you might have tolerated methylation therapy at much lower doses and also been able to raise glutathione through that route.

They started high but I attempted it a few more times with much lower doses and just didn't seem to tolerate methyl B12 at any dose. It was suggested to me to try hydroxy B12 instead (and this seemed to match better with my 23andMe results per one of my doctors) but I never did try it.

ETA: My doctor at that time felt that in my case, it was better not to try to open up the Methylation pathway while I was already so ill and better to leave it alone.

 

[Biarritz13]

Who here can claim remission from the "methylation protocol"? I like many others here have tried it with no real change.

I am sorry, using the word remission was a mistake but still some have had great improvement, such as @Johnmac

Yes, I'm still doing okay. Energy 90% fixed, blood sugar response much better, & quite a few other things.

I found that leaving out the methylfolate, potassium & carnitine & focussing on B2 + the B12 oil (adenosyl & methyl) did the trick for me. No more horror-crashes, & much more simplicity.